Reflections on life with Type 1 diabetes

On October 29, 2010, life handed me a battle: one that I had no choice in fighting, but one that I would soon learn to fight and know intimately.

I’m celebrating my sixth diaversary (diabetes anniversary) by trying to share some aspects of my battle with a chronic illness. I choose to frame my journey with diabetes as a battle, because everyday, day in and day out, I wake up and fight for my health. It’s a celebration because approximately 15,330 finger pokes, 1460 needles, 650 pump site changes later, I’m still strong and I’m still learning about how to best manage my life with diabetes.
“You have diabetes.” Three words, one simple sentence. Three words that no one ever wants to hear. Three words that filled the silence of a small office, ripping through the tension and unleashing a whirlwind of emotions in my 15 year-old self. My battle was just beginning.

I remember instantly sobbing. The only things I knew about diabetes were the constant finger poking, the needles and that, stereotypically, it was most common amongst older people with ‘unhealthy lifestyles.’ My grandparents had diabetes— this wasn’t something I had envisioned for myself. But Type 1 diabetes was now my new reality. I was not immune to the ignorance of society in understanding this complex, labour-intensive, and frustrating autoimmune disease.

I spent four days in the hospital, allowing doctors and nurses to monitor my health and learning how to manage my new reality. To say that it was a lot to process would be an understatement.

I was introduced to the world of insulin, needles, nutritional information, lows, highs, and eventually carb counting and insulin pumps. What I was not told was that diabetes would take a mental toll on my life.

Diabetes is my battle to understand the seemingly unexplainable.

At 15, I fought to come to terms with my diagnosis– an illness that I had only ever heard spoken of in reference to ‘unhealthy lifestyles,’ obesity, high sugar intake and death.

It’s tough not to fall into a ‘why me?’ cycle of self-pity when there is no causal explanation for why one of your organs has essentially stopped functioning. Six years later, I sometimes still struggle to come to terms with my diagnosis.

Diabetes is my battle to be understood. I battle to educate people on the serious reality of my illness and to dispel misconceptions.

I battle against the mainstream diabetes discourse that suggests the patient’s diagnosis is a result of their carelessness and unhealthy habits. I fight to dispel the myth that in order to maintain my diabetes all I have to do is take my insulin, eat healthy, and walk on a treadmill twice a week. With Type 1 diabetes there is no cure, there is no magic pill. These myths invalidate my lived experiences with this diseases and undermine the amount of time I spend frustratingly adjusting insulin-carb ratios, figuring out the right percentage in insulin reduction for my temporary basal rate at the gym, and battling morning insulin resistance. It undermines the amount of time I spend trying to figure out why my blood sugar is too high or too low. Was my carb count off? Is my pump working properly? Did I pick a bad site? Too little or too much insulin? Am I just stressed? Am I sick? Is my physiology changing again? Are you lost yet? So am I. I could go on but I think I’ve made the point.
As someone with diabetes, I constantly encounter people who think we take a pill in the morning, then go on with our day without thinking about diabetes: this couldn’t be further from the truth. I struggle between wanting to accurately present my lived experience and not wanting to generate feelings of sympathy and pity. My battle is personal.

Diabetes is my battle against stigma. I battle against stereotypes. I battle against comments suggesting it’s my fault because I ate too much sugar, or comments suggesting I can be cured with okra and cinnamon. I get tired of correcting ignorant comments about diabetes, and the conflation between Type 1 and Type 2. I battle the assumptions that I’m trying to lose weight when I choose a diet drink or “light” beverage. I test my blood sugar in restaurants, on the street, on public transit, and in class. I try to do so discretely, but I refuse to risk my health because someone thinks a little drop of blood is gross.

Diabetes is my battle against lows. I battle against low blood sugars that leave me sweating, weak, and disoriented, that have me racing against time to consume enough sugar in a state of panic. The dangerous lows I don’t feel. The lows from drinking alcohol the night before, over estimating a carb count, pushing myself at the gym, or eating later than usual. The ones that I can’t seem to find a reason for.

But I also battle against the emotional lows. All those times when I feel down and want to run far away from a life of diabetes, but can’t. I fight the feeling of physical and emotional constraint.

Diabetes is my battle against social isolation.

At times I have felt alone in managing my diabetes. I have felt overwhelmed by a university culture of partying, alcohol consumption and intense academic pressure. At times I have compromised my health to try to fit in, and I have separated myself to try to manage my health. I have compromised my health to exert myself academically and I have felt myself unable to exert myself academically because of feeling unwell. I battle against shame and self-guilt from having ‘bad’ blood sugars and worrying about future health complications.

It’s tough not to fall into a ‘why me?’ cycle of self-pity when there is no causal explanation for why one of your organs has essentially stopped functioning.

Diabetes is my battle against fatigue and burn-out. I battle to maintain balance.

People have asked me if I ever get tired of diabetes. The answer to that is emphatically and overwhelmingly yes. Life with diabetes often leaves me feeling exhausted. There are days I struggle to get out of bed. I can often sleep for ten or more hours and still wake up feeling exhausted.

The demands of life on its own can be overwhelming and stressful. Many students struggle with stress during exams. I am certainly not immune from these pressures. Dealing with diabetes on top of being a full-time student at university has pushed me in ways that are hard to accurately describe. I have experienced simultaneous burn-outs from both school and diabetes. That feeling of not wanting to look at another reading, go to another lecture, or write another sentence accompanied by the feeling of wanting to rip out my insulin pump, throw away my medical supplies and drop out of school. On those days I battle to move forward.

My battle wounds are far deeper than the scars from poking my fingers, or the marks on my stomach from changing pump sites. They have become an inseparable part of who I am in ways most people will never be able to understand.

I battle to do more than just survive. I battle to live life on my own terms. Diabetes is an obstacle and a pretty big one at that, but it doesn’t stop me from maintaining my ambitions. I get through today, wake up tomorrow and start the battle over again.